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Living With Epilepsy

For the most part, I’ll talk about anything in my life if someone asks questions. Hell, I’ll talk about it anyway if I think it’ll make an interesting blog or piece of writing. However, there’s a few topics I wouldn’t say are “off-limits,” but I’m not inclined to talk about a lot. The big one is depression. I keep saying I’m going to write a piece about it, but I never will. The second one is my personal life, not the aspects I put on the net, but the actual things that happen outside of the computer world. That’s for me. The third was always epilepsy. Most people don’t know I have it because I simply don’t think it’s anyone’s business.

That being said, I also don’t like talking about epilepsy too much because I feel like it changes people’s perspective of me. I feel like it makes me look like less of a person or weak because I have something wrong with my brain. I don’t want people thinking of me as an epileptic or thinking about me having a seizure when they see me or playing scenarios in their head of what to do if I do have a seizure. I want to be normal, so most of the time, I keep this a secret. Sure, the majority of people are thinking this way because they’re good people and care for me, but my epilepsy doesn’t define me.

When someone says “epilepsy,” this image pops into my head.

Recently, someone told me their child was diagnosed with epilepsy. She had lots of questions about things like medication and a few about the disorder in general, and surprisingly, I had answers. As I talked about living with epilepsy, she seemed reassured and a bit happy, even though I laid everything out on the table and felt a little weird about being so personal with someone. I felt good about it because I gave someone else piece of mind, if only for a moment. I figured that if my quick talk with her helped her, why not write a whole piece about it?

Before I get into the rest of this piece, I want to say this. I’m not a doctor, neurologist, nor an expert on epilepsy. All I have is my life experiences. If you or someone you know is dealing with epilepsy, see a neurologist. I went to film school, not medical school. Blogs are not the end-all, be-all of information. Free information is not always good information. Hopefully, there are people out there who read this and get some help from it.

I had my first seizure the first day of senior year of high school, back in 1999. I spent the night in the hospital while doctors tried to figure out what the heck was going on with me. At this point in time, they could not diagnose me epilepsy because, as I learned “everyone gets one [seizure].” One seizure does not mean you’re epileptic. It could mean many different things, including even heat stroke. They did a few tests, found nothing, and I went on my merry way. The next day, when I returned to school, I realized I should not talk about my personal life to people. I told all my new teachers I was in the hospital for having a seizure. None of them asked me if I was ok. Most of the responses were insulting. The one I will ALWAYS remember was my English teacher: “Mat, you’ll do anything to get out of class.” I had her in a previous year, and frankly, that comment really pissed me off. I went seizure free the rest of that year.

One year later, almost to the day, it happened again. This is where the testing began. My brain wants to remember this section of my life differently than it actually happened. My brain tells me I had test after test for a series of months and that I was exhausted and angry. What most likely happened was I had five tests and said, “I’ve had enough.” At the time, I was 18. I wanted to be a teenager, not a test subject, so I refused to have any more testing done on me. I really felt like a lab rat, and I wasn’t ready to be faced with my own mortality. I didn’t/don’t have photosensitive epilepsy, the type most people are familiar with AKA strobe light epilepsy. And from the testing that I did have, they couldn’t figure out what type I did have. I didn’t want to be tested on forever, so I said no more. I still don’t know if this was a good or bad decision.

I tried to forget about all of this and try to live my life. I went out. I drank. I stayed up all night. On occasion, I’d seizure. My neurologist kept telling me, throughout this time, I need sleep, and I shouldn’t be drinking. I also have to avoid stress. (Note: He still tells me to avoid stress, to this day, and it’s gotten to the point where I tell him something along the lines of “ok. then you can pay my bills while I relax.”) I only had grand mal seizures, which are the ones most people are familiar with. You lose consciousness completely, your muscles violently contract, and many times, you bite through your tongue. When you come back to reality, you’re faced with a horrible headache, bruises, bumps, and cuts from your fall, the taste of blood in your mouth, the inability to speak because your tongue is chewed up, and you feel like you’ve been up for 48 hours straight because your body is exhausted.

I tried a lot of different medications, but I kept having breakthroughs. Eventually, I was put on Tegretol, which is stupidly expensive. Again, I was still having breakthroughs, but they weren’t as frequent. This was something I could live with. I noticed a pattern within when I was seizing. It was always in the morning, within 30 minutes of waking up. It always happened when I got very little sleep, and it was happening when I was under a lot of stress or in the midst of a big change in my life. My last seizure happened right after my fiancee and I closed on our house. Before that, my last seizure was the day before I started my “big boy” job. Before that, I had a seizure when I finished college. Before that, I had a seizure the morning after writing my final college paper. I’m getting married next year, and I’m pretty sure I’ll seizure before that. Being aware of triggers has really helped me come to terms with my epilepsy.

It’s been 16 years since my first seizure, and 15 years since I was diagnosed with epilepsy. I’ve had this disorder for half my life. Here’s a quick list of things I’ve learned throughout my time, which may help you or someone you know with epilepsy.

Don’t be ashamed you have epilepsy.

It’s up to you to let or not let people know in your life you have it.

Keep notes on your seizures: when they took place, what is going on in your life, what you ate. The more data you collect, the better more your doctor can help you out.

Doctors are really expensive, but it’s something you have to do.

Buy a pill case and always carry it on you.

Set alarms to take your pills and ALWAYS take them at the same time, everyday.

Make daily routines your best friend. This can help with coping you have this disorder because you focus more on routine than the fact you have epilepsy.

If someone is making fun of you for being epileptic, laugh it off. Don’t show them it hurts. It’s just words.

Don’t hide things from your doctor. If you find yourself waking up and you’ve peed the bed or something else embarrassing, let them know. Again, the more information you give them, the more they can help.

Don’t try to go to work after you seizure. Sleep it off. Your health is more important than a paycheck.

If your state allows you to drive, even if you have epilepsy, don’t get into your car if you get that weird, “funny” feeling that is sometimes associated before a seizure